English

2 years Clinical Form

1 forms  
  1. StudyEvent: ODM
    1. 2 years Clinical Form
Administrative Data
Description

Administrative Data

Alias
UMLS CUI-1
C1320722
Indicate the patient's medical record number
Description

This number will not be shared with ICHOM. In the case patient-level data is submitted to ICHOM for benchmarking or research purposes, a separate ICHOM Patient Identifier will be created and cross-linking between the ICHOM Patient Identifier and the medical record number will only be known at the treating institution INCLUSION CRITERIA: Patients with craniofacial microsomia TIMING: On all forms REPORTING SOURCE: Administrative data RESPONSE OPTIONS: According to institution

Data type

integer

Alias
UMLS CUI [1]
C1269815
Patient characteristics
Description

Patient characteristics

Alias
UMLS CUI-1
C0815172
Indicate the patient's age at first encounter with team
Description

Supporting Definition: Recorded in months at 24 months and younger. Recorded in years if older than 24 months Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Numerical value Response option: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0001779
UMLS CUI [1,2]
C1514821
Indicate the patient’s sex at birth
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0079399
What is the ethnicity of subject?
Description

Note: A codelist is not supplemented because it varies by country and should be determined by country (not for cross-country comparison) Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Single answer

Data type

text

Alias
UMLS CUI [1]
C0034510
UMLS CUI [2]
C0015031
Is the patient affected bilaterally?
Description

Supporting Definition:Tracked with PAT-CFM Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0031437
UMLS CUI [1,2]
C0432131
Please calculate Asymmetry score?
Description

Supporting Definition:Tracked with PAT-CFM Inclusion criteria: Patients with craniofacial microsomia Timing: All time points Reporting Source: Clinician-reported Type: Numerical value Response option: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0031437
UMLS CUI [1,2]
C0376634
UMLS CUI [1,3]
C0332514
Please calculate severity score:
Description

Supporting Definition: Tracked with PAT-CFM Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Numerical value Response option: Numerical value

Data type

integer

Alias
UMLS CUI [1,1]
C0031437
UMLS CUI [1,2]
C0376634
UMLS CUI [1,3]
C0439793
Please indicate extracranial features per system: 1 = Cardiac
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0432131
UMLS CUI [1,2]
C0580586
UMLS CUI [1,3]
C1521970
UMLS CUI [1,4]
C0018787
Please indicate extracranial features per system: 2 = Renal
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0432131
UMLS CUI [1,2]
C0580586
UMLS CUI [1,3]
C1521970
UMLS CUI [1,4]
C0022646
Please indicate extracranial features per system: 3 = Nervous system
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0432131
UMLS CUI [1,2]
C0580586
UMLS CUI [1,3]
C1521970
UMLS CUI [1,4]
C0027763
Please indicate extracranial features per system: 4 = Digestive
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0432131
UMLS CUI [1,2]
C0580586
UMLS CUI [1,3]
C1521970
UMLS CUI [1,4]
C0012240
Please indicate extracranial features per system: 5 = Skeletal
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0432131
UMLS CUI [1,2]
C0580586
UMLS CUI [1,3]
C1521970
UMLS CUI [1,4]
C0037253
Please indicate extracranial features per system: 6 = Respiratory
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Multiple answer

Data type

boolean

Alias
UMLS CUI [1,1]
C0432131
UMLS CUI [1,2]
C0580586
UMLS CUI [1,3]
C1521970
UMLS CUI [1,4]
C0035237
Indicate if the patient has a genetically confirmed mutation, known to be associated with craniofacial microsomia?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0596612
UMLS CUI [1,2]
C0376634
Indicate which mutation:
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Clinician-reported Type: Single answer Response option: Free text

Data type

text

Alias
UMLS CUI [1,1]
C0376634
UMLS CUI [1,2]
C0026882
Family characteristics and community environment
Description

Family characteristics and community environment

Alias
UMLS CUI-1
C1521970
UMLS CUI-2
C0015576
UMLS CUI-3
C0563116
Please indicate your highest level of schooling completed (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0030551
UMLS CUI [1,2]
C0013658
Geographic location where the patient resides, specified by country and country specific postal code.
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Alphanumeric value Response option: Alphanumeric entry

Data type

text

Alias
UMLS CUI [1,1]
C0454664
UMLS CUI [1,2]
C0237096
UMLS CUI [1,3]
C0421454
Specify the distance in km from treatment team
Description

Supporting Definition: Calculated from residence and hospital location Inclusion criteria: Patients with craniofacial microsomia Timing: 2 years Reporting Source: Administrative data Type: Numerical value Response option: Numerical value of distance in km

Data type

float

Measurement units
  • km
Alias
UMLS CUI [1,1]
C0012751
UMLS CUI [1,2]
C0019994
UMLS CUI [1,3]
C0237096
km
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1302313
UMLS CUI [1,2]
C1518988
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C1302313
UMLS CUI [1,2]
C4696991
Indicate if the patient has been transferred to your institution after care was begun elsewhere
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0030704
UMLS CUI [1,2]
C0184681
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5, 8, 12, 22 years Reporting Source: Administrative data Type: Single answer

Data type

integer

Alias
UMLS CUI [1,1]
C0030704
UMLS CUI [1,2]
C0439787
Hearing
Description

Hearing

Alias
UMLS CUI-1
C0018767
Does the patient need a hearing aid?
Description

Inclusion criteria: Patients with craniofacial microsomia Timing: 2, 5 years Reporting Source: Clinician-reported Type: Single answer

Data type

integer

Alias
UMLS CUI [1]
C0018768
Back to the top of the page

Similar models

2 years Clinical Form

1 forms
  1. StudyEvent: ODM
    1. 2 years Clinical Form
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
integer
C1269815 (UMLS CUI [1])
Item Group
Patient characteristics
C0815172 (UMLS CUI-1)
Age at first encounter with team
Item
Indicate the patient's age at first encounter with team
integer
C0001779 (UMLS CUI [1,1])
C1514821 (UMLS CUI [1,2])
Item
Indicate the patient’s sex at birth
integer
C0079399 (UMLS CUI [1])
Sex
Code List
Indicate the patient’s sex at birth
CL Item
Male (1)
C1706180 (UMLS CUI-1)
(Comment:en)
CL Item
Female (2)
C0086287 (UMLS CUI-1)
(Comment:en)
CL Item
Undisclosed (999)
C0439673 (UMLS CUI-1)
(Comment:en)
Race/ethnicity
Item
What is the ethnicity of subject?
text
C0034510 (UMLS CUI [1])
C0015031 (UMLS CUI [2])
Item
Is the patient affected bilaterally?
integer
C0031437 (UMLS CUI [1,1])
C0432131 (UMLS CUI [1,2])
Phenotype: Bilaterality
Code List
Is the patient affected bilaterally?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Phenotype: Asymmetry
Item
Please calculate Asymmetry score?
integer
C0031437 (UMLS CUI [1,1])
C0376634 (UMLS CUI [1,2])
C0332514 (UMLS CUI [1,3])
Phenotype: Severity
Item
Please calculate severity score:
integer
C0031437 (UMLS CUI [1,1])
C0376634 (UMLS CUI [1,2])
C0439793 (UMLS CUI [1,3])
Extracranial features: Cardiac
Item
Please indicate extracranial features per system: 1 = Cardiac
boolean
C0432131 (UMLS CUI [1,1])
C0580586 (UMLS CUI [1,2])
C1521970 (UMLS CUI [1,3])
C0018787 (UMLS CUI [1,4])
Extracranial features: Renal
Item
Please indicate extracranial features per system: 2 = Renal
boolean
C0432131 (UMLS CUI [1,1])
C0580586 (UMLS CUI [1,2])
C1521970 (UMLS CUI [1,3])
C0022646 (UMLS CUI [1,4])
Extracranial features: Nervous system
Item
Please indicate extracranial features per system: 3 = Nervous system
boolean
C0432131 (UMLS CUI [1,1])
C0580586 (UMLS CUI [1,2])
C1521970 (UMLS CUI [1,3])
C0027763 (UMLS CUI [1,4])
Extracranial features: Digestive
Item
Please indicate extracranial features per system: 4 = Digestive
boolean
C0432131 (UMLS CUI [1,1])
C0580586 (UMLS CUI [1,2])
C1521970 (UMLS CUI [1,3])
C0012240 (UMLS CUI [1,4])
Extracranial features: Skeletal
Item
Please indicate extracranial features per system: 5 = Skeletal
boolean
C0432131 (UMLS CUI [1,1])
C0580586 (UMLS CUI [1,2])
C1521970 (UMLS CUI [1,3])
C0037253 (UMLS CUI [1,4])
Extracranial features: Respiratory
Item
Please indicate extracranial features per system: 6 = Respiratory
boolean
C0432131 (UMLS CUI [1,1])
C0580586 (UMLS CUI [1,2])
C1521970 (UMLS CUI [1,3])
C0035237 (UMLS CUI [1,4])
Item
Indicate if the patient has a genetically confirmed mutation, known to be associated with craniofacial microsomia?
integer
C0596612 (UMLS CUI [1,1])
C0376634 (UMLS CUI [1,2])
Phenotype: Bilaterality
Code List
Indicate if the patient has a genetically confirmed mutation, known to be associated with craniofacial microsomia?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Syndrome/genetic mutation
Item
Indicate which mutation:
text
C0376634 (UMLS CUI [1,1])
C0026882 (UMLS CUI [1,2])
Item Group
Family characteristics and community environment
C1521970 (UMLS CUI-1)
C0015576 (UMLS CUI-2)
C0563116 (UMLS CUI-3)
Item
Please indicate your highest level of schooling completed (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
integer
C0030551 (UMLS CUI [1,1])
C0013658 (UMLS CUI [1,2])
Parent education
Code List
Please indicate your highest level of schooling completed (level of schooling defined in each country as per ISCED [International Standard Classification of Education]
CL Item
None (0)
C0557286 (UMLS CUI-1)
(Comment:en)
CL Item
Primary (1)
C0013658 (UMLS CUI-1)
C0033145 (UMLS CUI-2)
(Comment:en)
CL Item
Secondary  (2)
C0557289 (UMLS CUI-1)
(Comment:en)
CL Item
Tertiary (3)
C0557291 (UMLS CUI-1)
(Comment:en)
Residence
Item
Geographic location where the patient resides, specified by country and country specific postal code.
text
C0454664 (UMLS CUI [1,1])
C0237096 (UMLS CUI [1,2])
C0421454 (UMLS CUI [1,3])
Distance from treatment team
Item
Specify the distance in km from treatment team
float
C0012751 (UMLS CUI [1,1])
C0019994 (UMLS CUI [1,2])
C0237096 (UMLS CUI [1,3])
Item
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
integer
C1302313 (UMLS CUI [1,1])
C1518988 (UMLS CUI [1,2])
Phenotype: Bilaterality
Code List
Indicate if there is a circumstance in which the patient has not presented for routine scheduled follow-up in the perioperative period (“no-show”) despite 3 attempts
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
integer
C1302313 (UMLS CUI [1,1])
C4696991 (UMLS CUI [1,2])
Phenotype: Bilaterality
Code List
Indicate if the patient has missed three (3) routine scheduled appointments or more prior to being officially discharged from clinic
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has been transferred to your institution after care was begun elsewhere
integer
C0030704 (UMLS CUI [1,1])
C0184681 (UMLS CUI [1,2])
Phenotype: Bilaterality
Code List
Indicate if the patient has been transferred to your institution after care was begun elsewhere
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
integer
C0030704 (UMLS CUI [1,1])
C0439787 (UMLS CUI [1,2])
Phenotype: Bilaterality
Code List
Indicate if the patient has been transferred out of your institution to receive care elsewhere and thus has ceased to have follow-up at your institution
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Item Group
Hearing
C0018767 (UMLS CUI-1)
Item
Does the patient need a hearing aid?
integer
C0018768 (UMLS CUI [1])
Hearing aid
Code List
Does the patient need a hearing aid?
CL Item
No  (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes, right (1)
C1705108 (UMLS CUI-1)
C0205090 (UMLS CUI-2)
(Comment:en)
CL Item
Yes, left (2)
C1705108 (UMLS CUI-1)
C0205091 (UMLS CUI-2)
(Comment:en)
Back to the top of the page